How are people with liver mets doing?
Comments
-
Rest in Peace Gumdoctor I am praying you have just returned home to our heavenly Father!
This makes me feel so scared of "how fast" the end can come...one day a person is getting treatment and doing ok...then in a week or 2 gone....
I have a very dear friend right now in the hospital ...she has had extensive bone mets for the past year...was on tamoxifen the first 6 months after diagnosis, young...40 years old...then bam it starts getting worse (the bone mets) they decided to go to Ibrance..and found that she had liver mets...I think just a couple....then within 3 months on Ibrance...she is now in the hospital getting a stint in her liver and has 9 liver mets......she had to fill out her Last Will and Testament they said she has 2 week to 6 months to live... Im like WTHECK???? Here I am thinking I have like a year or 2 or 3...I probably only have like months at that rate...
0 -
Nicolerod, I am puzzled why your friend isn't offered systemic chemo to quickly control the tumor growth. Maybe her health is not able to tolerate it? No one should feel there is no hope at that stage.
Please don't give up on your treatments..you will find your magic bullet.
0 -
Grannax2. Do you mind updating our Memoriam thread with Gumdoctor's passing?
0 -
Grannax2 -- Thanks for letting us know about Gumdoctor. So sad to hear of her passing.
0 -
Rest in peace, dear girl.
0 -
Thank you grannax2 for sharing. Rest In Peace, Gumdoctor. Pray’s for her family.
0 -
Grannax, the news of Gumdoctor's passing is crushing. I already miss her so much. It is hard to say goodbye. I very much appreciate your letting us know.
Nicole, please know that Gumdoctor had been having a difficult number of months prior to her going into the hospital and then Hospice. Time does go fast and it may seem like she was okay just a couple weeks ago, but she’d been in a steady decline since almost the beginning of this year and was aware of how fragile things were. It's always unsettling when a forum member we know and come to love passes. Tho we all share the diagnosis of mbc, we all so different. You seem to currently be stable and hopefully will stay that way for a long time.
0 -
she will be missed.
0 -
Very sad for Gumdoctor!!
And thanks to Sandi and Divine for providing strength and context
0 -
I’m so sorry to hear about Gumdoctor’s passing. Wishing the best for her dear husband.
0 -
Thanks Devine...I am not stable...I just progressed on Xeloda.
I didn't mean to say weeks.... I meant a few months...declining that fast from Jan to now...3 months....thats fast , to me..
0 -
May dear Gumdoctor rest in piece... Nicole, no one knows where things might go but even this year in 4 months 4 new treatments for MBC have been approved (HER2+, TNBC, but, let's say DS8201 also works wonders on Her2low), and you live in a country where you'll be first to access them when they come, so let us not think of the worst, let us hope for the best. Let's do what we have to do, and everything else is up to almighty God. Cures are coming very slowly but there are people who are thought to have been cured (doctors admit this silently), there are some even in these forums, and we have to do everything to be them. Saulius
0 -
Dear all, I don't want to intrude, as sad news about dear Gumdoctor reached us, but as this community is one of the largest, I wanted to ask what is your practice on CA15.3 vs CA27.29 markers? For example, our NCI does only CA15.3 and CEA, and I know other women in other cities who get only CA27.29? Why, is there some specificity? I am trying to find the difference in the internet and databases, and simply cannot, as they are both different markers of the same protein MUC1 used for BC. Thing is that my wife's CA15.3+CEA did not show disease progression (only local in the breast) last time, but we have never done CA27.29... it also seems that modern laboratories only do CA15.3? Does that mean that if 15.3 is "silent", 27.29 would be "silent" too? Thank you, and sorry again, Saulius
0 -
Saulius, I do both CA15-3 and CA27-29. My CA15-3 has always been low and in normal range other than once or twice when it was a few points above normal range. However, in the beginning, it did seem to trend in the right direction with whether or not a treatment was working. Small jumps (a few points) in the number would line up with progression and small declines would line up with a medicine working. However, that seemed to stop at some point and I noticed my CA15-3 began to have a habit of dipping unusually low right before I discovered progression. Once the CA15-3 stopped being as helpful, my MO added CA27-29 and I now receive both. My tumors markers do go out of normal range on the CA27-29 test when I am progressing on a treatment and do generally trend directionally in line with my progression and regression. I have bigger jumps and declines on the CA27-29 markers. I did have the CEA tumor marker test performed once or twice over the years but that didn't seem to provide any helpful information for me. For some reason, different tumor markers work for different people, at different stages. I don't know the rhyme or reason and neither do the doctors, for the most part. People do different tumor markers based on doctor preference sometimes. Some doctors don't do tumor markers at all as they believe they are unreliable. It is a conundrum. It is definitely worth trying one of the other markers if you are not having any luck with CA15-3. I think CA15-3 is the most common in the US although a good number of people do receive either CA27-29 or CEA, either alone or in combination with another tumor marker tests. My cancer center processes CA15-3 onsite and sends the CA27-29 to a third party testing facility.
I am so sad to hear about Gumdoctor. She had been having trouble for a while but I thought things might be turning around for her on her latest medication or at least buying her some more time. It seemed to happen so fast. I hate this disease.
0 -
Dear JFL, thanks a lot for an answer. As both markers represent same protein but different parts of the molecule, I was contemplating they do only one marker because they'd behave almost the same, so that is why they do only one, but my "theory" might not be true:/ I have to ask my wife's oncologist about that but during this COVID-19 they do not let me in:)P Saulius
0 -
Rest in Peace Gumdoctor. I'm sad to hear this heart-wrenching news.
Hope and peace to all of you brave ladies.
0 -
I am so sad that Gumdoctor is not with us anymore, her life was clearly such an encouragement even in hard hard times. What a precious and strong lady. Thanks so much Grannax for keeping in touch with her husband and for letting us know.
Dear Nicole, I can so hear and understand your fear... I received news of a possible second progression last week, will know for sure today what next. But I want to encourage you dear heart. I gather from your posts that you are a Christian. So am I. Off course this fact does not make us immune to suffering or the fear and grief that come with it. But we do have something that the content of our faith provides... The Hope that our Lord Jesus will come back, and when He does, he will raise these very same bodies from the grave, and as Paul said, mortality will be swallowed up by immortality. I wept last week when I received the news of my scans, and that night was very difficult in terms of the old familiar dread and fear, the what ifs and so forth, but at some point it dawned on me... I have the most important thing in the universe, which can never be taken away from me, and that is the forgiveness of my sins through the sacrifice of Jesus on that bloody cross, and His glorious resurrection from this horrible thing we so fear called death. And you too, Nicole, you too! Take courage dear one, nothing can separate you from the love of God that is in His Son. God bless you Nicole xxx
0 -
Daywalker...wow...thank you (((((((huge hugs))))))
I am so sorry to hear about your progression...please try to post here what happens today at your appoitnemtent. I just prayed for you...I don't know your real name for my prayer but God does.
Yes... I have my faith Thank you Heavenly Father for that!! Day..... Thank you for cheering me up and uplifting me in your time of trial...I guess that is what this site is all about. This week has just been hard hearing about deaths and what my friend is going through as well. I am just going to hold tight to the Lord that He is working things out here...working them out for His divine plan.
0 -
Saul I use- tumor markers have never tracked with my disease. Cea snd CA 27-29 have as Leary’s been in normal for me. When I had to switch oncologists she started ordering CA 15-3. I have always just been out of normal for this marker. When I track it, I notice it raises a few points ( 3max) so not a huge change when I am at my heaviest tumor load. I worry when the numbers stay higher or increase by 1-2 points for several successive tests. Otherwise, my values don’t tell me much. Both of the oncologist I have had agree tumor markers don’t accurately reflect my cancer status.
When u was in the drug trial, they didn’t draw any tumor markers.
If they are already drawing the other two for your wife, just ask them to add the 3rd. At be message th her via electronic chart?
0 -
Thank you Daywalker and Nicole for your words. I needed them. I too am a Christian. Daywalker- Keep us informed of your appointment.
0 -
Candy just prayed for you too!
Ladies also hold me in your prayers for blood work tomorrow praying my bilirubin is not too high that we have to stop the new chemo already. *** But ...I am holding tight to believing that God has a plan...and if that happens its because He is leading me to the RIGHT treatment!!!
0 -
Praying Nicole xxx Thanks for sweet replies both Nicole and Candy, they warmed my heart.
Well, not surprisingly I will move on from the short stint with Faslodex and Herceptin to a drug called Kadcyla. It has just been approved in my country, so hopefully my medical insurance will cover it. If not, then another Taxane and Herceptin. I had SBRT just under three months ago to two liver mets, but some of the others seem to have grown in the mean time. I still wonder whether radiation can cause inflammation and therefore confusion on scans, but the doctors say I need to move on. Bizarre how all this drama is just our own bodies going nuts on us.
Keep safe ladies xx
0 -
I did put Gumdoctor passing on the Memorium thread, I think. There are so many, I put it on the wrong one first, had to delete. Then I found the right one, I think.
I've been thinking about Gumdoctor so much. I even re read her profile and her husband shared some things. He said that the first mistake in her care was being DX at a late stage by the Army docs. Evidently they missed it for awhile, I don't know how long, and it was a IIIA at the very beginning. Then on December 20, 2018 she was DX stage IV with mets to the bones. I don't know exactly the day they found liver mets. It seems to me that she was never able to stay on a TX for very long. Example, only ten days on X. She had reactions and had to be taken off of it. At some point she had blood clots and that's the reason she couldn't have a y90. Everything that could go wrong went wrong with each TX.
During her last month She was trying to take Halevan, lots of problems. Her husband started noticing some things he thought were related to her pain meds. She was having difficulty using her phone, like her fingers would not go to the right numbers, then her memory seemed off I think there was some dizziness and headaches. Finally he took her to the hospital. They found Leptomaneageal disease in her brain. They planned to begin WBR but realized it was too late.
So, all that to say, she was active and enjoyed her 2 1/2 years even though she had so many complications that most of us don't have. The last month was miserable but she kept trying to live her life. I think she knew six months ago that things were going down hill faster than she had hoped. She was realistic but wanted to stay here for her husband.
The last went fast. That's actually the way I would want it to happen for me. If it's inevitable because the cancer has destroyed too much, I wouldn't want to linger. It's easier on the family, too, if the end doesn't drag out.
Her husband said he will have her buried in her dress uniform. I'm sure most of you know she was a Coronal in the Army. I think she would like that.💞
0 -
Thank you for the information. I did not know her, being too new here to this forum, but your words helped me to see her as a real person. I am sorry the diagnosis took so long and that so many things went wrong along he way, but it is good to hear she stayed who she was as a person until the very end. It seems she had a very loving relationship with her husband and I am happy they were together through this terrible ordeal. May their love keep him strong and help him remember all the good in their lives together. They will be together again one day.
0 -
Daywalker - thank you for posting such beautiful and encouraging words. The fear, grief, feeling awful, the disappointments really do test us as we wonder why. But as you say, nothing can separate us from God. We do not attempt to understand his plan, but we are part of it. He cannot take away our pain, but he goes there with us and thereby sanctifies it. And beyond this world, we will be raised up on that last day. Jesus died to make that all possible. He tells us to find peace in him. He knows that we will have tribulations in this world, but tells us to take heart and be at peace as he has overcome this world. Although often we feel we are alone, we are not. God is with us every step of the way. Keep the faith in His Son,
0 -
Day...are you responding to Herceptin? How long have you been on that? I see women saying they are years out on that and doing great?
Thanks for the info Grannax...exactly why my husband and I pay co-pays to not use military doctors and treatment facilities. To be fair though...unfortunately I know more than a few women who have been misdiagnosed with civilian doctors...so it doesn't just happen in the military.
Sometimes I do though feel like Gum...in the sense that I have not had any treatment truly work for any length of time... Its been exactly 1 year since I was diagnosed with Stage 4... Ibrance/Letrozole Faslodex... 3 heavy hitters which struck out for me after only 3-4 short months ..then Xeloda ...Fail after 3 months actually never even worked. Now Doxil....and now with bilirubin...I may be like Gumdoctor if it doesn't drop they will have to stop treatment.....
0 -
Hi everyone, haven't been posting for a bit as I was kind of sick & also crabby and depressed. Well, the crabby & depressed part is not 'was', it's "still am"
My blood work last Wed showed highly elevated liver values (2-3x maximum) but the MO though we could still go ahead with treatment, she just ordered LFT blood tests every 3 days for 3 weeks. But then on Thursday I woke up with a fever and with symptoms of a UTI. So they cancelled treatment, got me antibiotics, had my husband deliver a urine sample to the lab & I battled uti symptoms and fevers all through the weekend.
This is my 3rd UTI since mid March!
And each time it's been a different bacterium. And now I also have weird cysteine crystals in my urine which normally are associated with a genetic defect. I've had kidney stones before and they were calcium oxalate. My dad was the same. Where the cysteine is coming from is a mystery. I had a kidney & bladder CT which was super fast but no results yet. They are thinking the cysteine crystals are making it easier for an infection to take hold by providing a surface for the bacteria to stick. I'm now on prophylactic antibiotics taken 3x/week.
My MO said based on current LFTs I'm ok to go ahead with treatment tomorrow but at the same time she's clearly thinking that this treatment (clinical trial) isn't working for me. We won't know for sure until May 11 when I have my scans but she's already given me handouts on the next possible treatments she'd be recommending (xeloda or gemzar+cisplatin). That seemed ominous.
Then she talked about my fevers and cough and reminded me that if I start feeling more ill (I"ve had some shortness of breath) I need to go to the ER and they'll want to know what level of care I want. I did say that I've thought about it and at this point sadly DNI/DNR seems logical. She said, yup, great decision, here's a piece of paper to put on your fridge or bring with you to the hospital. That was the end of the appt.
So , seems like MO thinks there's high probability this treatment likely failed me in 2 cycles/months. She pushed hard to get me into this clinical trial so clearly she thought it was my best chance but now it looks like she's preparing plan B.
And then she made me think about death. Geeez, louise.
But barring any new weird things, back I go tomorrow for immunotherapy + taxol. Fingers crossed she's wrong about progression & this is working & I'm not just poisoning my liver more for nothing.....
Also, I have a one year membership to an organization to renew by end of April & I've been waffling about it. This visit today did not helphugs to everyone & esp hugs to those grieving gumdoctor.
I didn't get to know her well but it's a kick in the stomach whenever we lose a member.
0 -
Grannax2– thank you for checking on Gumdoctor and sharing the sad news of her passing. I had followed her her at BCO since 2018 and felt like she was a friend. Very sad to learn of her passing.
She was such a strong woman and fierce fighter. May she rest in peace.
Hugs to all her BCO friends. Prayers and sympathy to her dh and the rest of her family.
0 -
Moth please buy Fem Dopholus....its a probiotic specifically for the bladder...I had a chronic UTI for 2 years...this works...it takes about a month to build up in your bladder..it is not like other probiotics for the stomach it only has 2 strains. Make sure you buy the "cold ship" one NOT the shelf stable.
0 -
Nicole, I might be able to once I'm off the study. Right now have to get everything pre-approved by the trial coordinators before I take it. Generally they crossed out the supplements on my list before I started the trial. But not all, so I could ask...
0
